It has been a challenging week with Nathan unable to walk on his L leg. He can do everything else with it including jumping up and down on the bed on his knees, he is not having any pain, he is not sick, everything works and moves appropriately. I took him for X-rays and PT came yesterday to check him over. I did learn yesterday that it is pretty common to have unequal growth spurts with brain injuries, explaining this freakish leg length discrepancy. Regardless of whatever else is going on, he cannot walk with a full inch difference in leg length. He has to see the orthopedic and will have to have some shoes modified with a proper lift. I am unsure what is happening otherwise. The constipation is worse than ever before and the inability to walk makes me think nerves. I have done all I can from here with little improvement so we are leaving for Duke Monday morning. I cannot risk taking him to Kosairs and then Duke wanting him Life Flighted, this clinical trial makes things difficult. He is stable, happy, eating, talking and fit to fly commercial. It is not the shunt and I am doubtful it has anything to do with the tumor itself, he has no other symptoms. We should land at RDU early afternoon and then straight through the ER. The wheels fell off my suitcase and the scramble to rearrange accommodations is about to commence. I need a little while to regroup with some coffee and think about what is getting ready to happen. Please pray I can get through the shuttles, airports, car rentals without delay, Nathan is completely unable to walk or manage himself without his chair. We have had several scary spells this year, very uncertain, weird things, unexplainable issues that have appeared and just as quickly resolved. We have had some really easy fixes to some things that seemed liked Mt. Everest so there is no reason to think that these next few days wont lead us to some resolution on these issues. I would be lying if I said my heart didnt hurt, the unknowns and the experience all rush in at once at days like these. Nathan is fine, sleeping like a baby. He did great for Ms. Alison at speech yesterday. If anyone has a couple of large suitcases with wheels that you dont mind Southwest Airlines torturing, please message me. A trip to buy new luggage is probably not in the cards this weekend. Home for Christmas, please, please, please. XO
Posted on: Sat, 13 Dec 2014 15:21:26 +0000
Trending Topics
Recently Viewed Topics
© 2015